Editor’s note: This story was first published by The Sacramento Bee on January 4, 2021 and written by Claudia Boyd-Barrett.
Brandy Patania of Elk Grove feared something was wrong with her youngest child.
Kahmirah, who is almost 1, wasn’t developing as fast as her four older siblings had. She wasn’t walking, she didn’t say any words, and, when Patania called her name, she didn’t respond. Even more worrying, Kahmirah had a habit of flapping her hands up and down incessantly and making a drawn-out moaning sound.
Once, Patania observed her doing this for a full half hour.
“My first thought was Down syndrome, because I’d seen that in a movie before,” said Patania. “I wanted to get Kahmirah checked out.”
But it was April, 2020. Californians were sheltering at home because of the COVID-19 pandemic. Businesses and offices had closed. Patania, a single mother, wasn’t sure where to get help. Like many parents, she was also running ragged trying to help her four school-age kids with online school.
“It was definitely a lot,” said Patania, 31.
For parents, the pandemic has upended access to early developmental screenings. Many parents fear exposure to COVID-19 at clinics, so they avoid taking their children to the pediatrician’s office. Calls to community programs that provide screenings have dropped. Well-child checkups – which include developmental screenings – have plummeted.
At Capital Pediatrics, which operates five clinics in the Sacramento area, visits are down about 50% compared to pre-pandemic levels, said clinical director Dr. Ravinder Khaira. Well-child checkups are an opportunity to look for “orange flags,” he said – signs that a child’s development is threatened or not quite on track. It could be a toddler still drinking from a baby bottle. Or a 15-month-old who isn’t walking yet.
When caught early, simple parenting strategies or exercises are often enough to get the child’s development up to speed, he said. For developmental disabilities that can’t be cured, such as autism, experts say programs such as applied behavior analysis are most effective when started early, preferably when a child is still a toddler.
Now, Khaira worries these “orange flags” are being missed, potentially leading to an epidemic of harder-to-treat developmental challenges in the future.
“I think that the consequences of these missed appointments are far reaching,” he said. “I don’t think we as pediatricians…will be able to appreciate quantifiably the circumstances and the repercussions until years from now, when children start presenting with developmental issues that otherwise could have been treated or taken care of during their regular scheduled visit.”
Some parents may not realize their young child has a delay, or be too busy to follow up on a suspicion. Many children are no longer in preschool or childcare environments where signs of delay are often flagged. Parents are dealing with multiple stressors including COVID-19 infections, job loss, finances, working from home, and supervising online learning for their school-age children.
In this environment, seeking a developmental screening can easily end up low on the priority list.
“All of us are really concerned as pediatricians,” said Dr. Marti Baum, a California Medical Association board member and pediatrician at Loma Linda University in the Inland Empire. “We don’t even know what the aftermath of this is going to be… We suspect that it’s going to become more and more obvious that we missed a whole section of children.”
Experts agree it’s vitally important to identify and address developmental problems early, preferably by age 3. Doing so can drastically improve a young child’s chance of catching up with peers, or at least reaching individual potential. That’s why the American Academy of Pediatrics recommends pediatricians screen babies and toddlers for developmental delays at 9, 18, and 30 months.
Last year, Gov. Gavin Newsom signed a bill reinforcing a federal mandate that providers serving children enrolled in Medi-Cal conduct these screenings as part of well-child checkups, and has budgeted almost $50 million this fiscal year to pay doctors to do it.
The state also sent notices to families of all Medi-Cal beneficiaries under 21 informing them of their eligibility for preventive services, which include developmental screenings. Medi-Cal is California’s name for Medicaid, a government insurance program for low-income residents that covers almost half of the children in the state.
California already lagged on early developmental screenings before the pandemic. Only a third of parents with children under age 3 reported receiving a standardized developmental screening for their child in the past year, according to 2018 and 2019 National Survey of Children’s Health data. That’s below the screening rates reported in about half of other states.
Meanwhile, state data reported to the federal Centers for Medicare and Medicaid Services (CMS) shows that only 21% of children ages 3 or under enrolled in Medi-Cal received standardized developmental screenings in 2019.
Pandemic Sets Treatment Back
Now, child health experts worry the pandemic will set California back further.
In September, CMS put out an “urgent call to action” in response to data showing a huge drop in preventive care visits between March and May 2020 among children enrolled in the Medicaid program, including a 44% decline in developmental screenings. That’s 3.2 million fewer children that received screenings nationwide compared to the same period in 2019. The data accounted for screenings done via telehealth.
“The absence of these vital health care services may have lifelong consequences for these vulnerable children,” CMS Administrator Seema Verma said in a statement. “I call on states, pediatric providers, families, and schools to ensure children catch-up.”
Locally, doctors report that the number of appointments has picked up since declining drastically at the start of the pandemic. But many reported they are still seeing substantially fewer children than they used to, and have yet to make up for those they missed at the height of stay-at-home orders.
Dr. Erik Fernández y García, an associate professor of clinical pediatrics at UC Davis Health School of Medicine, said when families do eventually come in, their children are sometimes worryingly behind. He has had to refer some young patients and their families to therapy to address complex behavior challenges that developed during months of missed preventive care.
These problems often start when parents react inappropriately to common toddler behaviors such as tantrums or refusing to follow directions, he said. Caught early, simple parenting guidance is often enough to remedy the issue without the need for therapy, he said.
A Suspicion Confirmed
Desperate to find out if something was amiss with her daughter, Patania decided not to wait. She called Alta California Regional Center in Sacramento County, which offers intervention services for children with developmental delays.
They referred her to Help Me Grow Sacramento, an early identification program administered by the Sacramento County Office of Education (SCOE) that includes a helpline for parents to request a free screening or ask questions about their child’s development. Patania arranged for a screening via Zoom.
With Kahmirah sitting next to her, Patania followed the Help Me Grow advocate’s instructions and answered her questions by computer. Could Kahmirah put a small ball into a bowl? She couldn’t. When Patania dressed her, did Kahmirah try to help by putting her arms in the sleeves or her legs in the pants? No. Did she stretch up her arms when she wanted to be picked up? She didn’t.
Patania’s heart sank. As she’d suspected, Kahmirah’s developmental scores were low, although she didn’t appear to have Down Syndrome, a genetic disorder usually detected during pregnancy or soon after a baby is born.
The advocate provided Patania with a range of tips and activities she could do with Kahmirah to boost her physical development and language skills. She also referred her to Alta California Regional Center’s Early Start program for further evaluation and therapy. Alta and other regional centers across the state also experienced a worrying drop in calls following the pandemic.
“I felt very down, yet hopeful,” said Patania. “I thought, maybe she’s delayed, but I feel like with work and with help, she’ll get better over the next few months.”
Getting the Word Out
Patania was one of just 19 people to contact the Help Me Grow Sacramento call center in April. At Warmline Family Resource Center, the agency that houses the helpline, advocates normally field close to 100 calls a month. But when the pandemic hit, the phones almost stopped ringing, said program manager Diana Maffei. She thinks families shifted attention to coping with the new reality, and were also not seeing doctors and childcare providers who might have referred them to the helpline.
“To begin with, we thought it was just going to last a couple of weeks, and then things would go back to normal,” said Maffei. “As it became clear that it was going to last a lot longer we were like, OK, we need to reach out to families in different ways so they know this program is still up and running.”
Staff began ramping up outreach on social media, promoting the call center number, and offering online tips on ways parents can boost their children’s development. Program administrators at the Sacramento County Office of Education contacted doctors’ offices, hospitals and community agencies to let them know Help Me Grow was still operating and urge them to refer families in need. Advocates followed up with parents they’d assisted before the pandemic to see if they needed more support.
Phone calls and visits to the Help Me Grow website began to increase. By October, the number of calls to the Helpline had surpassed pre-pandemic levels for the month. Website visits were rebounding after dropping 86% between April and June. Family advocates were conducting more screenings, although not enough to make up for the shortfall from before the pandemic.
Natalie Woods Andrews, director of early learning at SCOE, said the missed screenings and calls from earlier in the year are concerning. But she’s optimistic about returning to normal so that the children needing help will get identified.
“We can’t change what is,” she said. “But I know we can change moving forward, in terms of building some urgency around the developmental screenings.”
Lori Banales, executive director of the Alta California Regional Center, said she’s also confident that young children who missed out on developmental screenings early in the pandemic will be identified.
The center – which serves children with disabilities in 10 counties including Sacramento, has also ramped up outreach to doctors, hospitals, and other entities that regularly see young children, and put its referral form online so people can access it after hours. Referrals for early intervention services dropped by about half in April and May, but by September had almost recovered, Banales said.
Silver Lining to Being Remote
There’s at least one silver lining to the pandemic-driven upheaval, she added. Regional Center workers and therapists have realized the viability of conducting screenings and many early intervention services virtually via computer or smartphone, making them more accessible to families who have difficulty getting to in-person appointments, such as those living in rural areas.
However, for developmental screenings, Dr. Judith Vallero, a pediatrician with Sutter Health in Davis, said in-person well-child checkups are preferable. These visits allow doctors to monitor multiple aspects of a child’s growth, including weight, height and head circumference, and to interact directly with the child to assess their social and emotional development, she said.
That’s why Sutter Health and other clinics have pushed hard to enact COVID-19 safety protocols and reassure parents it’s safe to take their kids to the doctor’s office, Fernández y García at UC Davis Health said.
“We really are there to work with parents to ensure that children grow up as healthy as possible,” he said. “That is why we do all of these screenings and why we want to see kids so frequently.”
Small Steps Forward
Patania and her daughter Kahmirah are now ready to start weekly early-intervention therapy online through the Alta California Regional Center. In an ideal world, Patania said she’d rather do the sessions in-person so that the therapist can fully watch and interact with Kahmirah. But in a world upended by a pandemic, she said she’ll take what she can get.
While waiting for therapy to begin, Patania has implemented some of the suggestions provided by the Help Me Grow advocate, including reading and singing to Kahmirah, passing a ball back and forth, and getting her to try putting on her shoes and helping to dress herself. The results are encouraging. Kahmirah is now walking, and crawling up stairs. She says “mama” and “papa,” waves goodbye and tries to talk. She’s not making the prolonged sounds and hand movements as much as she used to, Patania said.
“I have high (hopes) for her and I’m going to be here for her the whole way, even if there happens to be something wrong,” said Patania. “I’m glad I’m that mother to stand up and say, ‘hey, please tell me what’s wrong and what I can do to help my child.’ ”
Meanwhile, doctors and health officials continue to worry about the “orange flags” they’re missing due to the drop in developmental screenings, and the repercussions this could have for children long after the pandemic is over.
Fernández y García said he’s worried the latest surge in coronavirus cases could lead to a further decline in preventive care visits. He urged parents whose young children have missed a well-child checkup or are due for one to schedule an appointment. What seems to an adult like a short delay is eons in the life of a child, he explained.
“A child who turned 1 in March but didn’t come in until July or August – you’re behind about five or six months,” he said. “It’s a long time for a child that’s only been around less than two years.”
How to Find Help
If you have questions about your child’s development or would like to arrange a screening, contact Help Me Grow Sacramento at (916) 822-8744 or visit www.helpmegrowsac.org.
Claudia Boyd-Barrett reports for The Center for Health Reporting at USC’s Schaeffer Center for Health Policy and Economics. This story was supported by a grant from First 5 LA.